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Gabapentin Gel. or other topical creams
Thu May 10, 2018 9:43 am by Rosie21
Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.
Comments: 2
Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?
Sat Aug 01, 2015 4:17 pm by Fielder
Hi everyone,
I'm a newbie. I live in the UK.
I'm trying to work out the best cushion to get for my vulvodynia. I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.
I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …
I'm a newbie. I live in the UK.
I'm trying to work out the best cushion to get for my vulvodynia. I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.
I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …
Comments: 11
An absolute success story- please read!
Fri Mar 08, 2019 10:57 pm by Persevere1990
Dear All,
I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.
I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …
I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.
I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …
Comments: 0
I'm sorry im rambling
Thu Feb 21, 2019 5:49 am by Jet227
hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …
Comments: 1
New member need advice please
Thu Feb 28, 2019 11:33 pm by PANDORA123
Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.
Thanks
Thanks
Comments: 5
MonaLisa Touch
Fri Feb 08, 2019 7:35 pm by rl2091
Hi All,
I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …
I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …
Comments: 3
Diagnosed Recently
Tue Jan 08, 2019 3:55 pm by flissyg
Hi All,
I’m so glad I’ve found a place where there are others who understand how I feel!
So this is my story:-
I’m 36, and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”. The following morning I woke up …
I’m so glad I’ve found a place where there are others who understand how I feel!
So this is my story:-
I’m 36, and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”. The following morning I woke up …
Comments: 4
New and need advice and help
Wed Dec 05, 2018 3:26 pm by Cin124
Hi everyone,
About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …
About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …
Comments: 6
New here would very much appreciate advice at the end of my rope
Wed Jan 09, 2019 9:09 pm by Jma990o
This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …
Comments: 3
just needed to say.....
+4
lavrose
Kate1981
evanrude
Kelle_Belle
8 posters
Page 1 of 1
just needed to say.....
I really have tried to cope with this, the pain and the never ending discomfort, I have done everything I've been told to do, but nothing seems to work. I'm taking the highest dose of gabapentin I can take, also an anti depressent. Neither weem to have helped. I seem to have a couple of good days then the pain starts and i slip back down into depression. Its such a cruel isolating condition. My mum is getting sick of me, my friends are getting bored of me, my doctors treat me like an attention seeker and I think I'm going to lose my job soon.
I always said I would end up alone, but through my own choice. I'd finally gotten to a stage in my life where I actually liked myself, I had confidence. Now all thats gone, the choice has been taken away from me.
Its nearly 4 in the morning and I'm tired and in pain but I dont want to go to bed because I know I will wake up and the pain will start. I can feel myself trying to become invisable, avoiding calls, ignoring texts, I want people to forget me because the person they knew is not here anymore.
When I wake up and the pain starts I feel this horrible mist comes over me and I wish to god I'd never woken up. Being possitive has left me exhausted and weak. I really cant see a future for me through all this. I'm so angry that this has happened to me, its so cruel, I've never knowingly hurt anyone, i always try to make others happy, i was just poddling along in my small but happy life. I just dont understand.
I havent written this for attention, I have written this because i have no one else to talk to so I figured typing it out of my system might help. So now I'll go to sleep, I'll fight it as long as I can but i know I cant survive without it. I really dont know if I want to survive to be fair.
To anyone who reads this, I wish you well, I hope your pain free and your strong. I hope you have people supporting you. I hope your loved and not alone. Goodnight x
I always said I would end up alone, but through my own choice. I'd finally gotten to a stage in my life where I actually liked myself, I had confidence. Now all thats gone, the choice has been taken away from me.
Its nearly 4 in the morning and I'm tired and in pain but I dont want to go to bed because I know I will wake up and the pain will start. I can feel myself trying to become invisable, avoiding calls, ignoring texts, I want people to forget me because the person they knew is not here anymore.
When I wake up and the pain starts I feel this horrible mist comes over me and I wish to god I'd never woken up. Being possitive has left me exhausted and weak. I really cant see a future for me through all this. I'm so angry that this has happened to me, its so cruel, I've never knowingly hurt anyone, i always try to make others happy, i was just poddling along in my small but happy life. I just dont understand.
I havent written this for attention, I have written this because i have no one else to talk to so I figured typing it out of my system might help. So now I'll go to sleep, I'll fight it as long as I can but i know I cant survive without it. I really dont know if I want to survive to be fair.
To anyone who reads this, I wish you well, I hope your pain free and your strong. I hope you have people supporting you. I hope your loved and not alone. Goodnight x
Kelle_Belle- Posts : 15
Join date : 2012-11-05
Age : 43
Location : North Lincs UK
I understand
I feel the same way sometimes. I tell myself I must have done something so horible to deserve this, but I really
am a nice caring person.
I feel that no guy will want to ever stay with me. I can't blame them though.
But remember we all deserve to be happy and be loved. This has got to better someday.
I'm convinced that VV is caused by a reaction to our own bodily fluids. I think our own
discharge is irratating our skin down there. That's my theory.
Please hang in there. You're not alone.
You did the right thing in venting on this forum. That is what it is for.
Hug to you.
am a nice caring person.
I feel that no guy will want to ever stay with me. I can't blame them though.
But remember we all deserve to be happy and be loved. This has got to better someday.
I'm convinced that VV is caused by a reaction to our own bodily fluids. I think our own
discharge is irratating our skin down there. That's my theory.
Please hang in there. You're not alone.
You did the right thing in venting on this forum. That is what it is for.
Hug to you.
evanrude- Posts : 15
Join date : 2011-11-01
Location : USA
Re: just needed to say.....
Kelle Belle
im totally with you I feel the same. Im not far away from you just on the opposite side of uk near manchester. I am also same age. I had a horrid break up last year after 9 years and was heartbroken I pulled myself together and worked like mad to save for my own house. I finally got my own home then bang I have v. I havnt been able move in bcos i cant afford the bills i am also potentially going to lose my job. Im long haul cabin crew so there is no way I can fly in all this pain. I feel ive lost eveything. Im not me anymore I feel like an existance that no one wants to be around. I feel alone and worthless. I have always been a good person and never slept around as I am so protective of myself and catching something then I get v a life sentence.
im totally with you I feel the same. Im not far away from you just on the opposite side of uk near manchester. I am also same age. I had a horrid break up last year after 9 years and was heartbroken I pulled myself together and worked like mad to save for my own house. I finally got my own home then bang I have v. I havnt been able move in bcos i cant afford the bills i am also potentially going to lose my job. Im long haul cabin crew so there is no way I can fly in all this pain. I feel ive lost eveything. Im not me anymore I feel like an existance that no one wants to be around. I feel alone and worthless. I have always been a good person and never slept around as I am so protective of myself and catching something then I get v a life sentence.
Kate1981- Posts : 88
Join date : 2012-08-17
Location : Manchester, UK
Hey
Im 32, and I went thru what your going thru for years. Thru essential oils, Ive finally gotten my vaginal pain under control, )I feel cured) and Ive gone 6 days without putting oils inside, but now I have interstital cystitus, which is more painful and far worse(a bladder infection 24/7) that there is no cure for, never goes away. Antibiotics make it go away, then it comes back a week to 2 weeks later. You cant even sleep thru the night as you have to get up to pee, 20 times a nite, and your uncomfrotable all the time.
Its a drug resistant bacteria.
I have some anger issues with God at this point now.
Its my destiny to be cursed in the nether regions, and Ive considered suicide as interstitial cystitus is so much more painful than vulvodynia, which Ive dealt with nonstop for years, ever since I lost my virginity. Its not that you cant have sex. Its that your in pain, every moment of your life, to where you cant get out of bed.
Its the darkest most awful thing Ive had to go thru, and being someone with severe cliniacal depression, whos suffered in every aspect of my life, (Ive had a very hard life)
I have my daughter and with her things are better.
Before the bladder thing, I felt confidant, and ok, with myself and life, and for the first time, happy, and at peace. Well adjusted as Id never felt that before.
Then this happens to me, and Im a really nice person.
I guess bad things happen to good peoplem it doesnt matter
Its a drug resistant bacteria.
I have some anger issues with God at this point now.
Its my destiny to be cursed in the nether regions, and Ive considered suicide as interstitial cystitus is so much more painful than vulvodynia, which Ive dealt with nonstop for years, ever since I lost my virginity. Its not that you cant have sex. Its that your in pain, every moment of your life, to where you cant get out of bed.
Its the darkest most awful thing Ive had to go thru, and being someone with severe cliniacal depression, whos suffered in every aspect of my life, (Ive had a very hard life)
I have my daughter and with her things are better.
Before the bladder thing, I felt confidant, and ok, with myself and life, and for the first time, happy, and at peace. Well adjusted as Id never felt that before.
Then this happens to me, and Im a really nice person.
I guess bad things happen to good peoplem it doesnt matter
lavrose- Posts : 152
Join date : 2012-04-28
...
I will say that I cured my SEVERE vulvodynia with essential oil suppositories, and a better diet, supplements, vitamins and most of all probiotics.
Bt now I have an incurable bladder infection, that Ill have to go disability for.
Its cruel. A cruel joke
and forget about relationsips.
Bt now I have an incurable bladder infection, that Ill have to go disability for.
Its cruel. A cruel joke
and forget about relationsips.
lavrose- Posts : 152
Join date : 2012-04-28
Re: just needed to say.....
Hold up are you it's an infection and not Ic? Most infections can be taken care of by antibiotics. Ask your doc to culture your labs and see which antibiotics kill thebinfection in the lab. That way you aren't pumping chemicals in your bosh and proceed from there. I had the bladder issue too mine just went away with time if that helps you at all. I also started taking a cranberry supplement
Alana3- Posts : 1093
Join date : 2012-09-25
Re: just needed to say.....
kelle belle I think a good direction for you to go in is to ring your local hospital and get put through to the physiotherapy department then ask if they have a Womens Health Physio and if so get her to have a word with you about being referred for pelvic floor/pelvic pain physio sessions. If you haven't got one at your hospital (I think you will have) there's David Nunns at Nottingham who you can be referred to and he has a team of physios who work there for him treating women with vulvar pain. If you haven't ruled out dermatological issues (assuming there's anything to see) there is a specialist vulval dermo called Dr Julia Schofield who visits various hospitals in the area on a monthly basis so you can ask to be referred to her by either your GP or local GUM clinic if you have visible signs that might mean a dermotological condition. Remember vulvodynia only means "pain in the vulvar" and isn't a condition or disease in its own right so establishing the cause should be your priority. If you haven't already get a copy of the book "When Sex Hurts" as it talks you through the various causes and helps you figure out where to go next.
lavrose as far as I'm aware IC isn't caused by a mystery bacteria and if you respond to antibiotics it would imply you are actually having recurrent UTIs rather than have IC and also lots of women with IC respond very well to having their pelvic floors released so it might be a good idea for you to try that route too. I'd be careful of all the oils you are using in the area, some won't do much harm but you do seem to be using rather alot and oil in particular can make it easier for bacteria to get into the urethra plus changing the ph of the vagina with lots of oils will also make you more prone to UTIs plus bacterial vaginosis so be careful.
I think we've all been through the life isn't worth living feeling and the best way forward from that is to get busy figuring out why you have the problem and what you need to do about it, most doctors abuse the term vulvodynia because they don't rule out all known causes before they slap that "diagnosis" on us so it's up to us to rule out infections, skin conditions, musculoskeletal causes, allergies etc and it's surprising how far you can get without needing your GP especially if you have a decent GUM clinic which is how I made headway in the beginning. It's often not necessarily the way it begins that's the clue as it tends to start suddenly anyway but look at any other health issues you have and try to establish if they could be connected. Research but don't get put off by women saying it can't be cured, the reason for this is that's what they get told by doctors who don't look for the cause because without looking for the cause of course a doctor will talk about it like it's mysterious and incurable whereas if you really have a pelvic floor issue the diagnosis should have been pelvic floor dysfunction which is very treatable, likewise if it's a skin condition or allergic reaction so definitely put some time into becoming your own doctor for this health problem because GPs don't really get pelvic pain at all unless it's something they can throw drugs or surgery at.
lavrose as far as I'm aware IC isn't caused by a mystery bacteria and if you respond to antibiotics it would imply you are actually having recurrent UTIs rather than have IC and also lots of women with IC respond very well to having their pelvic floors released so it might be a good idea for you to try that route too. I'd be careful of all the oils you are using in the area, some won't do much harm but you do seem to be using rather alot and oil in particular can make it easier for bacteria to get into the urethra plus changing the ph of the vagina with lots of oils will also make you more prone to UTIs plus bacterial vaginosis so be careful.
I think we've all been through the life isn't worth living feeling and the best way forward from that is to get busy figuring out why you have the problem and what you need to do about it, most doctors abuse the term vulvodynia because they don't rule out all known causes before they slap that "diagnosis" on us so it's up to us to rule out infections, skin conditions, musculoskeletal causes, allergies etc and it's surprising how far you can get without needing your GP especially if you have a decent GUM clinic which is how I made headway in the beginning. It's often not necessarily the way it begins that's the clue as it tends to start suddenly anyway but look at any other health issues you have and try to establish if they could be connected. Research but don't get put off by women saying it can't be cured, the reason for this is that's what they get told by doctors who don't look for the cause because without looking for the cause of course a doctor will talk about it like it's mysterious and incurable whereas if you really have a pelvic floor issue the diagnosis should have been pelvic floor dysfunction which is very treatable, likewise if it's a skin condition or allergic reaction so definitely put some time into becoming your own doctor for this health problem because GPs don't really get pelvic pain at all unless it's something they can throw drugs or surgery at.
Sarah001- Posts : 1164
Join date : 2010-06-11
Age : 50
Location : UK
Don't give up.
Don't give up! I know it really hurts physically and emotionally to have this. I live in fear of my boyfriend leaving me all of the time. But remember that people get over this problem every day. Do EVERYTHING YOU CAN! Get rid of all sulfates in your cleansing routine, change your diet and remember to go easy on the stimulants. I have even found that birth control makes it far worse. You'll be pain free, I promise. There is always hope.
katie220- Posts : 17
Join date : 2012-09-30
Re: just needed to say.....
I feel the same way! My vulvodynia came back after three years of painfree sex. Im having panic attacks cause I remember how awful the pain is.. Im starting to go into depression again.
Dandsforever- Posts : 2
Join date : 2012-11-27
Location : san diego, ca
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Fri Oct 23, 2020 12:04 am by ringostarr26
» Please tell me this can get better
Sat Jul 18, 2020 7:38 pm by sammykramer
» By no means cured, but doing much better!
Mon Mar 16, 2020 1:26 pm by tinkerbelle2
» How I cured my Vulvodynia!
Sat Dec 07, 2019 11:54 am by Millie
» 7 months since the diagnosis
Wed Aug 14, 2019 2:38 am by agtoronto
» Gabapentin Gel. or other topical creams
Sat Jun 15, 2019 5:22 pm by mary jane
» IMPORTANT FOR UK SUFFERERS
Sat Jun 15, 2019 5:21 pm by mary jane
» Help New Diagnosis
Sat Jun 15, 2019 5:07 pm by mary jane
» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Tue Jun 11, 2019 12:56 am by VVSSufferer